Developing survey research infrastructure at an
Historically Black College/University to address health
disparities.

Abstract:

This article describes the development of the Center for Survey
Research at Shaw University, a Historically Black College and University
(HBCU), and its efforts to build a data collection infrastructure that
addresses issues germane to health disparities research in the African
American population. Academic institutions that are similar to Shaw in
size, mission, and background can use the Project EXPORT collaboration
and the Center for Survey Research as models for establishing their own
research infrastructure and subsequent survey center in order to address
health disparities through the use of survey methodology.

Inequalities in health outcomes and health care persist between
racial, ethnic, and socioeconomic groups in the United States with
African Americans suffering greatly from these disparities. For diseases
such as cancer, heart disease, stroke, HIV/AIDS and diabetes, the
morbidity and mortality rates for African Americans far exceed that of
white Americans (Hayes & Boone, 2001). Research has shown that these
adverse health outcomes are inextricably linked with lifestyle choices,
personal decisions, resources, and environmental factors and are
influenced by culture, history, and values (Sullivan-Bolyai et al.,
2005). Powell and Gilliss state that the urgent desire to correct the
ill-distributed health profile for minorities in the United States is
counterbalanced by the reality that complex cultural, historical, and
value-laden traditions contribute to the habits and lifestyle choices
that are ultimately responsible for health and health care outcomes
(Powell & Gillis, 2005).

To meet the objective of eliminating these disparities, research
studies must incorporate a broad range of methodological approaches and
cultural issues with regard to the collection of data from racial,
ethnic, and socioeconomic minorities and other hard-to-reach populations
(Keppel et al., 2005; Ramirez et al., 2005; Stewart, Napoles-Springer,
2003; Sue, Dhindsa, 2006). Examples of these methodological approaches
include 1) mixed-mode and mixed-method approaches to increase
participation of otherwise hard-to-reach groups in order to provide
context to quantitative data, 2) community-based participatory research,
and 3) collection of data across the life-course (Bulateo, Anderson,
2004; Halfon, Hochstein, 2002; Zarit, Pearlin, 2005).

Examples of cultural issues include the formulation of valid
constructs to measure health disparities, (i.e., those that consider
comparisons of subgroups as part of the research design and data
analysis plan), and development of valid and reliable scales to properly
assess ethnic minority subgroups.

To properly measure health disparities, one must assess the
differences among racial/ethnic subgroups and the data being compared
must be obtained using a uniformed framework approach, so that it is
accurate and complete.

HBCUs were established primarily for the socialization and
education of African-Americans who for a long time in American history,
were not allowed to attend majority institutions. Due to their
connection with the African American community, HBCUs are uniquely
positioned to have an understanding of cultural and social norms and
issues related to data collection, data analysis, translation, and
dissemination that larger, research-intensive institutions may not
possess (Carey & Howard, 2007). Recognition and utilization of this
potential has led to research collaborations between universities which
have been seen as ideally suited partnerships in order to develop
sustainable solutions to improve health outcomes. Carey et al., 2007).
Because health disparities affect African Americans in such a
disproportionate rate, the level of involvement of Historically Black
Colleges and Universities (HBCUs) and their researchers should be
increased and more specifically, they should have a major role in the
development of research methodologies and the collection of data for the
elimination of these disparities.

Shaw University (Shaw) was founded in 1865 and is located in
Raleigh, North Carolina. Primary a teaching institution, Shaw has a rich
history of addressing the educational, social and health concerns of its
surrounding community and is the oldest HBCU in the south. Though no
longer operational, Shaw was home to the first medical school in the
Unites States to offer a four-year curriculum to its students and
throughout its thirty-six year history between 1882 and 1918, nearly
four hundred graduating physicians provided medical services to the
underserved.

In 2000, Shaw and the University of North Carolina at Chapel Hill
(UNC-CH), a research intensive institution located in Chapel Hill, began
a formal collaboration to build a mutually beneficial portfolio of
educational and research endeavors and, in 2002, received the National
Institutes of Health (NIH) National Center on Minority Health and
Disparities (NCMHD) Project EXPORT grant (Carey et al., 2007). For a
collaboration such as this, it was important to plan and design mutually
beneficial programs and outcomes, engage in an intentional process to
build a shared vision, design a plan for implementation, hold each other
accountable, and determine ways in which both institutions would benefit
(Johnson, 2005). Known as the Carolina-Shaw Partnership for the
Elimination of Health Disparities (US PHD Center), the objectives of the
collaboration were to facilitate Shaw's emergence as a research
university, train junior faculty and students in health disparities
research, and to explore the use of novel faith based initiatives to
address health disparities (Walker et al., 2007). The Carolina-Shaw
Partnership was unique in that its focus was on infrastructure-building
at Shaw University to increase its capacity to conduct health disparity
research through the establishment of the Institute for Health, Social,
and Community Research (IHSCR).

The IHSCR is an umbrella unit for the health disparities research
being conducted at Shaw. The Center for Survey Research (CSR) is one of
several units comprised within the IHSCR. The goals of the CSR were to
1) increase external support to facilitate the development of both
substantive and methodological capacities to conduct research; 2)
utilize this capacity to conduct research on health and social issues
relevant to African Americans and other ethnic-minority populations; 3)
provide training and support for faculty, students and staff at Shaw
University in the areas of survey and research methodology; 4) serve the
Shaw community by enhancing the on-campus capacity to conduct high
quality research; 5) incorporate commercial survey operations to
diversify outreach and enhance links to regional industry, and 6)
disseminate the Center's research productivity. The following
description of the activities involved in developing a Center of Survey
Research at Shaw University may benefit other institutions of higher
learning that wish to develop CSRs.

BUILDING THE CENTER FOR SURVEY RESEARCH

One of the specific aims of the Carolina--Shaw Partnership was to
build survey research infrastructure at Shaw University and a survey
research unit that would serve as the flagship for all survey-related
responsibilities for Project EXPORT research that took place at the
IHSCR as well as provide data collection and project management services
to business owners and non-profit agencies. Early development of this
research infrastructure was largely modeled after the creation of a
similar campus research organization, the Survey Research Unit (SRU) at
UNC-CH in the early 1990s.

The first step in the establishment of survey research
infrastructure at the IHSCR was hiring qualified personnel and staff
development. Pertinent positions that needed to be filled included the
Director, Survey Research Associate, Telephone Interviewers, Student
Assistants and Student Interns. The role of the Director was to manage
all the activities of the Center including marketing and outreach,
contract negotiation with clients, maintaining high quality technical
support for Center operations, staff training and skill-building, timely
completion of all contracted activities and deliverables, and
preparation of reports and other documents related to Center activities.
The Survey Research Associate's responsibilities included
interviewer recruitment, training, supervision and evaluation, protocol
development for all contracted activities, quality control,
troubleshooting technical and organizational problems arising during the
interview session, staff and resource projections for contracted
services, and timely completion of all interview activities. Student
Assistants and interns worked in the call center conducting interviews
for the various studies.

The capacity for the IHSCR to collect data and develop research
methodologies was enhanced by the mentorship and training from the CSR,
SRU, and Department of Biostatistics at UNC-Chapel Hill. Consultation
was also provided on such issues as human subjects' protection
training for survey research, telephone survey methodology, survey
research business development and computer-assisted telephone
interviewing operations. CSR staff members took advantage of several
areas of training and development including the Certificate Program in
Survey Methodology at UNC-Chapel Hill and courses in survey computing
and analysis and statistics. CSR staff also participated in short
courses such as: Nonresponse Bias Studies, Subjective Measurement in
Surveys, Multi-item Scales & Factor Analysis, Response Rates on
Telephone Surveys, Web Survey Design, and Introduction to Survey
Quality.

Another important component in building the CSR was finding a
location with enough space to house a fully operational call center.
Initially, the CSR was housed in an off-campus site in close proximity
to the Shaw University campus until the federally funded
32,583-square-foot IHSCR main facility was built. When the complex was
completed in 2008, the CSR was moved into IHSCR office space outfitted
with twenty-four calling stations equipped with computers, telephones,
and noise cancelling headsets. The CSR was strategically linked to the
Center of Biostatistics and Data Management (CBDM), another unit of the
IHSCR, drawing on its expertise in reliability and validity testing of
survey instruments.

Because computer-assisted telephone interviewing (CATI) is the
predominant mode of survey data collection, the CSR staff formed a CATI
evaluation group to compare several software packages and to make a
purchasing decision. The group decided on the WinCati 4.2/Sensus
software by Sawtooth Technologies, Inc. WinCati 4.2/Sensus was selected
because the system allowed for conducting surveys in telephone only, web
only, or mixed-mode formats. Staff members participated in training on
the software conducted by Praxis Computer Research. Biostatisticians
from the IHSCR CBDM were trained to learn the interactions between data
entry, data management and survey data analysis modules of the software.
This process helped the CBDM to be fully versed in the capabilities of
WinCati and could assist in designing effective data collective
strategies for various survey operations undertaken by the CSR.

For the first two years as the infrastructure for the CSR
developed, the IHSCR relied on a local information technical support
company to set up internet access and support, network administration,
and for server maintenance. This company also provided consultation on
computer and other purchases. As the CSR became more stabilized and
expanded, the need for an IHSCR-based information technical support
person increased, so an IT specialist was hired to maintain technical
support for the CSR and the other units within the IHSCR including the
CBDM. The emergence of the CSR and the CBDM coincided in that the both
units were able to assist research clients with survey design,
formatting, CATI development, database development, pre-testing for
reliability and validity, data entry, data analysis, and information
technology support.

The Center for Survey Research (CSR) was developed from a core of
the UNC-Shaw Partnership for the Elimination of Health Disparities
(Project EXPORT) (grant P60 MD00239) funded by NIH NCMHD in 2002. The
mission of the CSR is to support the IHSCR in its goal to become "a
national leader in the multidisciplinary empirical investigation of
diverse issues that affect the health and well being of minorities,
particularly African-Americans, and their families, and the communities
in which they live." The CSR has the capacity to design surveys,
administer surveys by phone, and mail self-reported surveys to potential
participants, the CSR uses the Win Cati4.2/Sensus software to administer
computer-assisted telephone interviews (CATI) and also has the capacity
to conduct web-based surveys. In cooperation with the Center for
Biostatistics and Data Management, the CSR is developing a pretesting
laboratory for the evaluation of survey instruments for reliability and
validity. Pre-testing techniques include focus groups, behavior coding,
and cognitive interviewing. The CSR solicits contracts at the local,
state, and national levels with the aim of becoming fully
self-supported.

The CSR is composed of 24 calling stations and a supervisor
station, making the CSR the largest calling room at an HBCU in the
nation. Each sound absorbent calling station is equipped with a personal
computer, NEC Electra Elite IPK telephone, and a Plantronics Supra
noise-canceling headset. Immediate plans include administering virtual
surveys. The CSR has dedicated space for administrative staff to monitor
Core activities and perform needed operations including production,
duplication, and assembly of survey instruments; assembly and packaging
of surveys for mail; receipt, sorting, and review of surveys for data
entry; and secured storage of documents consistent with records
retention protocol. University students and local community members are
hired and trained as professional Interviewers. All interview staff
participates in a comprehensive training, monitoring, and evaluation
program.

Students and interested faculty receive training on how to
administer surveys through CSR's Interviewer Training Program. The
Interviewer Training Program is based on the standard principles and
techniques used in the survey research industry. The main components of
the training program include 1) basic interviewing techniques, 2)
protection of human research subjects, 3) computer-assisted telephone
interviewing, and 4) project specific training. Students and interested
faculty will participate in a four-day training in which they will first
learn how to administer surveys. After training in the basic techniques,
they then receive project specific training. Specifically, interested
faculty and students receive training on the background on minority
health and racial health disparities research, education and awareness,
and community-based participatory research approaches to the design of
research and the development of survey items. Students and faculty
receive training in quantitative and qualitative data collection. In
order to meet the requirements of the Shaw University Institutional
Review Board, each interested faculty member and student are trained in
the protection of human research subjects. After general training and
project specific training, students are then be trained in the use of
computer-assisted interviewing using the WinCati 4.2 Interviewer
application. Interested faculty and students are trained to code and
enter survey data based on the CBDM's data management conventions.
They are trained in refusal conversion, survey pre-testing methods, such
as focus groups, behavior coding and cognitive interviewing, and
verification of interviews. Central to the students' success is the
opportunity to practice what they have learned. Students and interested
faculty are expected to pass a post-training quiz in order to be
certified to begin data collection. Students and interested faculty
practice several mock interviews before interviewing actual respondents.
They receive feedback during training to reinforce their knowledge and
to build their confidence in conducting interviews. The Head Interviewer
oversees the training and monitoring of student interviewers during
training and during each calling session. A Field Supervisor oversees
the work of students conducting face-to-face interviews.

Having a Research Analyst for the CSR is necessary. The Research
Analyst should have a Master's degree in Information Systems,
Programming or Data analysis, with familiarity with CATI software and
experience with Sawtooth WinCATI should be preferred. The Analyst should
also have an understanding of statistical techniques for the social
sciences. The Analyst will should be able to perform programming and
analysis tasks using, WinCati, Excel, Access, and other software as
appropriate. In addition, the Analyst should be able to:

* Program questionnaires in Ci3 and/or Sensus.

* Set up telephone interview studies in WinCATI.

* Set up databases in Access.

* Processes, loads, and manages sample for use in WinCATI or in
mail-out surveys.

* Merge, modify, and edit data files as needed for analysis or for
use as sampling databases.

* Prepare graphs and tables in Excel, Word, and other software as
appropriate.

BUILDING COLLABORATIONS AND RELATIONSHIPS

As originally conceived in the Project EXPORT grant, the CSR would
be a shared resource for the EXPORT center and the faculty, staff, and
students of Shaw University and intended to become financially
self-sufficient. In order to pursue collaborations and market itself,
the CSR created business cards, a web site, an informational packet, a
brochure and a business plan. Since the CSR is a non-profit academic
center, marketing efforts have not been as aggressive as commercial
organizations but the CSR has built several collaborative relationships
with clients within and outside Shaw University. Because the CSR is part
of a research institute, the necessity to seek independent outside
clients has decreased, as more multi-million dollar research grants have
been funded.

The CSR has been an asset to investigators who require services in
sampling and questionnaire design, interviewing, data entry and analysis
for their research studies. The initial contract the CSR received was
Project CONNECT; the purpose of the study was to build trusting
relationships with the African American community that would lead to
meaningful participation in research germane to health disparities.
Project CONNECT identified individuals who were interested in
participating in health disparities research studies and developed a
registry of potential volunteers. The CSR worked with Project CONNECT on
every aspect of the venture and it proved to be a beneficial first
project because it allowed the CSR to fully test the capacity of the
unit and identify areas of improvement for future projects. The CSR
conducted telephone recruitment of 900 individuals from four North
Carolina counties--Durham, Wake, Guilford and Mecklenburg. A significant
amount of data was gathered by the CSR and was used in a number of
presentations, publications and grant applications. This experience also
helped the CSR develop its capacity to conduct opinion polls.

The CSR has provided consultation to members of Shaw's
divinity school regarding the collection of data from faith-based
organizations and provided survey methodology and collection services
for a study involving congregational health assessment dissemination.
The opportunity to work with Shaw and faith-based organizations supports
the specific aim of the EXPORT grant to provide the on-campus capacity
to collect data to both Shaw University and the community served by
Shaw. The CSR has partnered with state public health agencies, local
community-based organizations and with several universities on health
disparities studies giving Shaw the opportunity to expand its research
activities in partnership with large research institutions. Along with
the Project CONECT and the Shaw University Divinity School research
studies, listed below is an abbreviated list of the research projects
where the services of the CSR have been utilized:

* Shaw University Training Networks for National Library of
Medicine Online (NLM) Resources. The Center for Survey Research
partnered with the Department of Computer Science at Shaw University on
the development of data collection and evaluation instruments with the
purpose of raising public awareness of how to take advantage of the
NLM's online resources to intervene in the health disparities that
disproportionately affect African Americans.

* Shaw-Duke Maternal and Infant Mortality Initiative: Interventions
to Improve Outcomes Among Pregnant Medicaid Recipients (MIMI). The CSR
designed data collection and evaluation instruments for the study in
collaboration with Duke University. The aim of the study was to identify
and describe cultural values and beliefs that influence and shape how
families perceive and give meaning to caregiving.

* Body and Soul: A Celebration of Healthy Eating and Living. The
CSR developed data collection instruments, session evaluation forms,
developed a database for the project, and conducted follow-up calls for
the mailed letter and informational sessions. The goal of the study was
to assess the educational and communication preferences of faith-based
organizations.

* Developing a Pilot Intervention to Increase Child Mental Health
Service Utilization by African-American Families (TASK). The CSR
developed a self-administered questionnaire and conducted telephone
interviews with parents of children with mental health diagnoses.

*Data Collection/Data Distribution Network ([DC.sup.2]). The CSR
provided survey methodology services and developed a data collection
instrument to be disseminated in African American churches to assess
their health needs, priorities and concerns.

* Social Constructions of Cultural Meanings and Reasons for
Caregiving in African American Families. The purpose of the study was to
help reduce adverse maternal and infant outcomes for pregnant African
American Medicaid recipients. The CSR conducted telephone interviews and
analyzed qualitative data using thematic analysis.

* Disparities in Prostate Cancer Treatment Modality and Quality of
Life: Baseline Study. The CSR recruited participants and conducted
telephone interviews with African American prostate cancer patients with
the purpose of investigating the effects of race, economic status, and
psycho-social factors on the quality of life of men diagnosed with
prostate cancer.

* Effects of Informed Decision-making and Knowledge on Utilization
of Prostate Cancer Screening Procedures of the Sons of Men Who Were
Diagnosed with Prostate Cancer. The CSR recruited participants and
conducted telephone interviews with the sons of men who had prostate
cancer to better understand how personal experiences and risk perception
impact lifestyle choices and screening behaviors of adult men.

* Development of an Organizational Readiness to Change Instrument
for Black Churches. The CSR conducted telephone interviews with African
American pastors to assess their church's readiness to participate
in health disparities research.

* Sermon-based Messages for HIV Prevention. The CSR conducted
telephone interviews with pastors to determine their willingness to
develop sermons to address HIV in the African American community.

CHALLENGES

The resources that the Center for Survey Research has available for
researchers both at Shaw and outside the university has grown
significantly since the unit was created but not without some
challenges. Specifically, the most considerable challenge for the CSR
initially was locating adequate space on Shaw's campus to house the
CSR. It was important for the CSR to be located on campus to facilitate
easy access for Shaw researchers, students, etc. to assist in the
development of research agendas and survey methodologies for their
studies, as well as fully identify the CSR as part of the university.
This was ratified by the construction of the IHSCR building, a 32,583
square foot complex funded by NIH National Center for Research
Resources, housed on the campus of Shaw University. Another challenge
has been the development and maintenance of efficiency throughout the
constant evolution of tools and methods used for data collection and
analysis. Ensuring that CSR personnel remain proficient with new
technologies through trainings, seminars and workshops allows for the
staff" to improve their expertise and be better prepared to work in
a setting where their capacity to measure, collect, and assess accurate
data are key. An additional challenge the CSR has faced has been
increasing its visibility and making known its capabilities to attract
contracts with researchers within and outside of Shaw's campus. To
address this, several focus groups were planned to assess the need for
and interest among Shaw University faculty for a series of methodology
workshops or seminars on data collection research methods. The impetus
for the focus groups was a desire to strengthen the unit's
interaction with the Shaw faculty. Interest among the faculty was almost
non-existent and spoke to the lack of buy-in by the faculty possibly due
to time constraints placed on faculty given the heavy teaching loads or
a lack of career focus. Additional interviews and/or focus groups are
needed to assess interest in CSR services among the commercial
community. Other challenges included maintaining the CSR after the
initial Project EXPORT grant ended and adjusting to fluctuating funding
patterns. The CSR had to be self-sustaining and could not expect
financial support from the University. It was necessary that funding for
the CSR staff and infrastructure was considered in all new grant funding
opportunities.

CONCLUSIONS

Since 2002, the Institute for Health, Social, and Community
Research has been able to bring more than $25 million dollars in grant
funding for health disparities research to Shaw University. One of the
reasons why Shaw has been able to compete for federal research dollars
is because of its capability to conduct survey research. Due to the
collaboration between Shaw and UNC-CH, an independent and functional
Center for Survey Research has been established at Shaw and has been key
in the development of research designs and instruments for many IHSCR
related health disparity research studies and projects by outside
clients. The development of the CSR has enhanced both research and
academics at Shaw University by providing opportunities for faculty
development, student survey research training and jobs, and increased
funding opportunities for principal investigators.

According to Jenerette et al (2008), the outcome of a collaboration
can be seen in subsequent health disparities research that builds upon
the pilot work and, in the case of the CSR, the growth of the center is
reflected in the number of contracts it has received. The CSR has
achieved success by building its methodological capability, establishing
several key collaborations and relationships, and building its technical
capabilities through multiple funding sources. Using the partnership
between the University of North Carolina at Chapel Hill and Shaw
University as a catalyst, the CSR has positioned itself to become a
leader in the innovation of survey methodologies that are particularly
relevant for health disparities research. Academic institutions that are
similar to Shaw in size, mission, and background can use the Project
EXPORT collaboration and the Center for Survey Research as models for
establishing their own research infrastructure and subsequent survey
center in order to address health disparities through the use of survey
methodology.

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